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A Patient’s Perspective on Breast Cancer, Fertility, and Race

Photo of Tiana N. Rogers, PhD
Tiana N. Rogers, PhD

A typical day finds Tiana N. Rogers, PhD, sitting down at her computer and diving into community-engaged research and social impact measurement. As director of the Data, Policy, and Performance Innovation team at the University of Utah Sorensen Impact Center, Tiana leads a variety of portfolios focused on capacity building in the various sectors, including health equity, criminal justice, and social services. She uses a systems approach to investigate the net effect of philanthropy, government, and nonprofit entities’ activity on a community and the well-being of individuals and families. More simply put, she says that her role is that of a translator: to help people understand how to use research to address complex social problems, such as homelessness and racism. In other words, she uses data to make a difference.

But it’s been a long time since Tiana has had a typical day.

In February 2020, before COVID-19 dominated headlines in the United States, Tiana made a doctor’s appointment. She had a lump in her breast. "Before then, my focus was on family building," she says. "My husband and I were trying to have a baby." The year before, Tiana had learned she was pregnant and at nine weeks suffered a miscarriage. Later that fall, she again felt her hopes build before a trip to the ER showed her unexpected yet new pregnancy to be ectopic; the fertilized egg was growing outside the uterus.

Charles and Tiana Rogers
Charles and Tiana Rogers

"As my doctor did my exam, she asked if I had a family history of breast cancer," Tiana recalls. "I didn’t." Her doctor was also surprised that Tiana was only in her early 30s.

Then, her physician said something Tiana will never forget. All indicators pointed to the lump being nothing to worry about, "but she also said she knew Black women are more likely to die from breast cancer than White women, even though Black and White women get breast cancer at about the same rate." So, Tiana’s medical provider explained, she didn’t feel comfortable watching and waiting. She sent Tiana to Huntsman Cancer Institute (HCI) for images and more tests.

"To have a provider who is culturally competent and able to say, ‘I know the disparities and would hate for you to be the outlier’—that is what should be happening. But I also know that is not the norm." From her experience researching health disparities, Tiana knew the statistics very well. In addition to cancer inequities, Black women are three times more likely to die from a pregnancy-related cause than White women in the United States.

At HCI, Tiana was diagnosed with stage II breast cancer. She and her care team were relieved to catch it early. "We talk a lot about inequities," Tiana says. "And I believe we have to talk about when things go well, too. I had textbook care. I know that if my doctor and I had decided to watch and wait, it would have impacted my [outcome and] choices."

Those choices included a recommendation for genetic testing. Research shows Black women are not referred for genetic tests as often as White women, she adds. Though Tiana had no genetic markers explaining why she had breast cancer so young, she still found the information useful. Especially as she and Charles looked to build a family.

At 34, Tiana was in the adolescent and young adult (AYA) cancers category, which includes patients ages 15–39. But unlike people on the younger end of that spectrum, fertility was not a distant desire. She and her husband wanted to have a child as soon as she safely could. So when Tiana and Charles met with University of Utah Health’s cancer treatment and infertility (oncofertility) team to learn about treatment options, they prioritized expedience.

"In my first appointment with the reproductive office, we met with Dr. Letourneau. He was so kind and gracious. He sat down with us and literally drew images of everything: this is what it would look like for IVF and this is what it would look like if we froze embryos." And even with two PhDs between Tiana and Charles, they found they still had a lot of questions.

"My husband does cancer research and understands this jargon," Tiana says of Charles’s work as a colorectal cancer researcher at HCI. "I was so blessed to have someone who knew what questions to ask. But even so, we’re not experts at treatment and fertility options. It just highlighted for me the need for advocacy, particularly for underrepresented communities. I wholeheartedly believe that knowing what questions to ask would help reduce some health disparities. Many people just don’t have the information."

Tiana pursued a treatment that had lower odds of cancer recurrence and would still allow her to have biological children.

"There’s something to be said for providers who respect the autonomy of their patients," she says. "You’re the expert of yourself and what values and priorities matter to you. I don’t feel like you should have to choose whether you live through cancer treatment or have children. I think you should be able to have both."

Tiana is currently on oral chemotherapy continuously for a year. As long as she takes this medication for a total of five years, she can pause for pregnancy and breastfeeding. And after the first year?

"I can take as many breaks as I want and have as many babies as I want."

Meanwhile, Tiana’s experience professionally and personally led her to an esteemed fellowship in research methods and supportive oncology at Harvard University, which will complement her work at the University of Utah. "I submitted a proposal for a study around BIPOC [Black, Indigenous, and people of color] women who have cancer diagnoses and fertility. My proposal is rooted in a recent study that revealed only about 40% of patients are told that cancer treatment could affect their fertility. And of the patients sampled, most of them were White women." Tiana’s research will examine if or how fertility options are communicated to people with breast cancer, especially to BIPOC women.

"I believe that to whom much is given, much is required," Tiana says. "Serving other people is the rent you pay to be part of a community. I just hope I can touch somebody and be a glimmer of hope."